At the end of February, one month before my 45th birthday, I checked in to the ER because I was having difficulty breathing and my heart was racing. Turns out that I had congestive heart failure from severe anemia from a suspected long term internal bleed. I was there a few days to get stabilized, have four blood transfusions, and have an endoscopy, which showed no issues. GI doctor wanted to do a colonoscopy but had to wait for my heart issues to subside, so I was sent home.

Last Wednesday, the colonoscopy was performed but the gastroenterologist could only get the scope up about 60cm before encountering a mass. She did not want to risk perfusion, and besides I was in pain when the scope reached that point. She checked me into the ER to have another couple of units of blood and to have a CT scan done. CT w/contrast revealed a 4cm mass with possible lymph involvement. The pathology report came back as "adenocarcinoma." I met with the surgeon on Friday about doing a partial colectomy (left hemisphere) which will likely be done laparoscopically. Surgeon suspects Stage III, but he's just giving his non-oncologist hunch. The surgery still hasn't been scheduled but I was told it will be either April 28th or May 5th.

I have been trying to learn as much as possible about diagnosis and treatment but there is so much to take in. For example, in one of the posts on this forum, I read that it is a good idea to get tested - before surgery - for genetic mutations or other biological abnormalities that might influence treatment or staging. I won't be seeing my oncologist until May 25th, so I have absolutely no idea 1) if my particular situation calls for such testing and, if so, 2) how to go about advocating for it.

mpbser wrote:Hi Everyone,. . . For example, in one of the posts on this forum, I read that it is a good idea to get tested - before surgery - for genetic mutations or other biological abnormalities that might influence treatment or staging.

Hi and welcome, sorry for the reason you had to join us, butt you will find a lot of information and support here.

I've been out of the treatment process for a few years now and a lot has changed. But other than CEA blood test, and a PET/CAN scan, I'm not sure of any other test they would do prior to your surgery. I know they will send your removed tumor off to pathology for a lot of testing, which could impact the type of chemo, or follow up care you will receive. Yes I believe they will be looking for mutations at this time. It sounds like you do not have rectal cancer thus radiation will not be needed prior to surgery.

I believe for genetic testing, they can do at any time. Again I could be wrong here, this type of test was not available when I was diagnosed.

Because it look like lymph nodes are involved, yes you probably are a stage III. It the CAT scan had showed possible cancer spread to other organs, you would be a stage IV. I was diagnosed a stage III 13 years ago and I'm very much alive and kicking today.

I would advice, if possible have a board certified colon rectal surgeon do your surgery. They have extra training dealing with the colon rectal area. And when you are in the hospital walk, walk, walk those halls. Be sure to bring comfortable slippers and a long wrap around robe vs a step in and zip up robe. Those few few days you will have a few IV with one hospital gown with the back open .

Welcome. Some things I have learned. Please try and go to a specialty dr/colon rectal surgeon. I had my work done at Sloan and it made a huge difference in the keeping all information connected and delivered to me. It was a huge peace of mind during a crappy time. I do not believe it matters when u get the genetic testing. I am going for my 6 month bloodwork soon and will be asking about the genetic testing then. I had about 10 inches of my sigmoid removed and 13 lymph nodes, an ovary and Fallopian tube. Research but don't research too much it will drive you crazy. This site was so helpful and I relied a lot on the great advice from here. Hope this helps

Welcome and sorry for the reason you're here.*hugs* I hope your surgery goes well.*hugs* It really helps to walk around after surgery because it helps get the bowels moving. Also hugging a pillow when coughing or sneezing. I had genetic testing done after my surgery.

As per your question, genetic testing wouldn't change your initial standard treatment so there is no rush. You can wait until May and talk to your Oncologist about it. My Oncologist recommended it to me mostly to see if family members need to be checked. For example, my ex has a genetic mutation that caused him to have medullary thyroid cancer, so my kids are all getting tested to see if they have this gene as well.

I just had my blood drawn for genetic testing at my first post chemo follow up. I met with a geneticist and she explained the process and possible results. I get seen at a major cancer center (MD Anderson) and they recommended the testing time frame. I saw them in Oct before my chemo started and they scheduled me for testing this April. I would think they would have tested me in Oct if they thought it could possibly effect treatment.

I am MSI high and that will effect my future treatment if the cancer returns. The onc mentioned immunotherapy. But that's usually not the first line of treatment.

As an add on, I received chemo in my area and drive to Houston for a second opinion, etc.

Genetic testing was not available in my city. I had to go to Houston for that. I had to get 2 separate referrals and authorizations from my insurance company.

The insurance company "should" pay for the testing but of course you will have to verify. Only certain labs (at least in my area) can perform the tests. I have to pay a copay of up to $100. The lab will call me before they test to give me the opportunity to either say yes and pay or say no and the test isn't done.

I am new too, and not at all as informed or knowledgeable about these issues. Just relating my experience. Good luck. It's a lot of stress and information and worry. This board is awesome and the folks here will help you.

Thanks, Liz. I am still learning what MSI is, and how that might affect treatment. There is just so much new information and often its contradictory information. For example, I have read that chemotherapy is needless in cases of stages I to II CC and for stage IIIA CC with low risk of recurrence, such as node positive T1/T2 patients. (https://wjso.biomedcentral.com/articles/10.1186/1477-7819-12-145) Elsewhere, I have read that it's standard for all stage IIIs and even for stage II.

In “High Risk Stage 2 and Stage 3 Colon Cancer, Predictors of Recurrence and Effect of Adjuvant Therapy in a Nonselected Population,” a study found that adjuvant chemotherapy did not significantly increase recurrence-free survival. The article also states that the "American Society of Clinical Oncology advises against the use of adjuvant therapy with the exception for patients with characteristics that increase risk of recurrence."

I assume that my oncologist will take a common and conventional route as she is not at a leading institution, just a small town center in a podunk part of the country. I don't have the luxury of choice as my insurance and financial situation require me to stay within my network.

I just got the book Cancer: Out of the Box but I am a little hesitant to read it. I don't want to feel at odds with my doctors because I fear alienating them might jeopardize my care. I have found over the years that many doctors can be very threatened when presented with data that contradicts their paradigm.

mpbser wrote:Thanks, Liz. I am still learning what MSI is, and how that might affect treatment. There is just so much new information and often its contradictory information. For example, I have read that chemotherapy is needless in cases of stages I to II CC and for stage IIIA CC with low risk of recurrence, such as node positive T1/T2 patients. (https://wjso.biomedcentral.com/articles/10.1186/1477-7819-12-145) Elsewhere, I have read that it's standard for all stage IIIs and even for stage II.

My understanding with stage III, standard protocol is chemo. With stage III, you have cancer cells in your lymph nodes. You REALLY want to kill them off before they can find a new home in another part of your body like your liver or lungs. The difference between A, B, C, is the number of nodes effected, butt the fact still remains you have cancer cells in your body that you REALLY want to kill off with chemo.

Stage II can be a grey area, then you need to consider how deep the tumor went, how aggressive the cancer cells are, etc. If you are a stage II, I would HIGHLY recommend a 2nd opinion at a major cancer treatment center, because it can be a grey area. You want the latest greatest research giving you an informed opinion. Not something that is 5-10 out of date.

Please remember you've only got one chance to get it right the first time, you want to give it 110% the first and not look back with regrets.

mpbser wrote:I just got the book Cancer: Out of the Box but I am a little hesitant to read it. I don't want to feel at odds with my doctors because I fear alienating them might jeopardize my care. I have found over the years that many doctors can be very threatened when presented with data that contradicts their paradigm.

This is your life, you need to be your own advocate and if that means asking a lot of question, DO IT!!! If your Dr can not deal with your researching & presenting other options, maybe it's time to find a new Dr. Not all doctor are up to date on the latest procedures. Remember, not all Dr graduate at the top of there class, some are better than others.

There are many survivors here who were told they only have a few months or a few years to live. Yet many of them are NED today because they did there own research and being their advocate.

I am stage III because of one LN on the MRI. MDAnderson Houston said standard treatment is chemorad/surgery/chemo, with the hope of killing whatever cancer cells migrated to the node and are looking for a new home. I'm on a trial which is half FOLFOX/surgery/half FOLFOX (Prospect trial) with the hope that FOLFOX will result in comparative local reduction without the rad side effects before surgery. We'll see.

I went to a nutritionist yesterday at the recommendation of my primary care doctor. I told her that I have been eating broccoli on a regular basis now and made other drastic dietary changes (I was also diagnosed with diabetes within the past month). She actually told me to cut down on the broccoli. Sorry, but I know people who have reversed Stage IV cancers naturally with hard core raw foods vegan diet, supplementation, and exercise, so I have absolutely no faith in a nutritionist who recommends cutting down on broccoli.

I'm even on the fence about surgery and most definitely about chemo, so this is a very hard slog for me!

Hello. I'm sorry about your diagnosis but PLEASE don't just consider treating your cancer solely by eating a vegan diet. We have many members on this board who were vegan, ate all the right foods, exercise like fiends and yet they still were diagnosed AND you'll even find people on this board who, AFTER being diagnosed with cancer still ate and exercised and their cancer returned. I'm just being honest that eating a specific diet....all by itself isn't going to 'cure' cancer. If that's all it took, all of us would be munching down on carrots, broccoli, cauliflower, etc. and doing sit ups, biking, etc.

Your nutritionist had a very REAL reason for telling you to cut down on the fiber. In 'normal' situations, yes, eating fiber is 'good' for you....fiber including your veggies, whole grains, etc. However, when you have a tumor blocking your intestine, actually eating more fiber makes it difficult to pass stool and can become very uncomfortable. Right now, with a tumor in your intestine, the last thing you want to do is irritate that area and because fiber is more difficult to digest (and because broccoli can cause gas.....which can become very uncomfortable) you will want to cut down on it.

I hope that you do decide to have surgery....otherwise that tumor is just going to continue to grow and it will become even more difficult to pass stool until you are totally blocked and that would be extremely painful. The tumor isn't just going to 'melt' away without having it be removed. After surgery, even though you can live without some of your large intestine, your digestion will change...at least initially...during recovery....and you will need to change your eating habits to accommodate this change. This is why the nutritionist is telling you now to cut back on so much fiber. I know you don't want to trust her because her advice is going against what you think is right but cancer changes all the rules. As for chemo, please consider it. You won't know your stage until after surgery but if they suspect one or more lymph nodes may be affected (based on the CT), then you're looking at a stage III diagnoses and everything changes with that one (or more) lymph nodes. Lee is quite right in her post about lymph node involvement. Once the cancer has gotten into even ONE lymph node, it can and will eventually find it's way to other places, via the lymphatic system. One place might be the lungs...another might be the liver....or it could be both. It may never go to another organ but just find other lymph nodes in different parts of the body to travel to. Why allow the cancer to potentially grow and become harder to treat? Why not kill it off when it's smaller and more easily contained?

You have to look at this as ONE year out of your life. Sure, it may be a crappy year....starting with your diagnosis, tests, surgery and chemo .....but it is hopefully just one small blip in the rest of your life. You take it one day at a time and just do what you have to to get to the next day and the day after that. When I was diagnosed in June 2006, it took me 10 months to go through all the treatments...surgery, chemotherapy, chemoradiation......an unexpected hospitalization along the way for blood clots.....but here I am, 10 years after my last treatment (yesterday, 4/20/2007 was exactly 10 years ) which was surgery and I'm doing well. Was it 'fun'? Heck no. Were there scary parts? Sure there were but that's part of life.

I can only tell you that this will NOT just go away by eating 'correctly' or exercising everyday. I'm not saying that those things aren't important but you really need to look at the whole picture here and decide what you want to do for the rest of your life. You're young and have a whole LOT of living left to do. Please, although it may seem scary.....please don't be on the fence about the surgery and/or the chemo. Doctors wouldn't recommend those treatments if they weren't the right way to go. Good luck in whatever you choose to do.

I'm sorry, but that is the Big Pharma dominated paradigm dogma that I simply don't buy into wholesale.

First, my wife reversed her cardiovascular disease naturally with diet, exercise, and supplementation when her primary care doctor wanted her to go on statins.

Second, she is educating me about the politics and money behind the pharma-cancer industry as she is an attorney who used to work in Regulatory Affairs for a bio-engineering company.

Third, I don't have an obstruction and fiber is absolutely essential to efficient digestion. Broccoli is one of those super foods with anti-carcinogenic properties (if organic) that is not difficult to digest as the nutritionist claimed. My only problem is that I have been on a high fat, low fiber, pro-inflammatory diet for far too many years. I'm going to rely on PhD level experts in clinical nutrition on this one.

Fourth, as I mentioned before, I know people who have completely reversed their Stage IV cancers going the natural route. Sure, you may know some people who said they tried a natural treatment protocol, but I know from my wife's experience that it has to be diligent and extreme in order to be effective. It's not about just modifying a little here, a little there. We are talking about 1 hr cardio 5x/week, mega doses of the appropriate supplements, extreme veganism with juicing and intermittent fasting, and no deviations. The people I have known to go this route, including my wife, are met with disbelief by their doctors, who act completely stunned. This is because the industry is so dominated by the Pharma interests that alternatives are unfathomable. But, I have seen it with my own eyes and have heard of it by a number of people who were skeptical and dug into the data.

I am not going to make a decision because I have been fear mongered or bullied into it, so please don't waste time trying to convince me one way or another. I didn't think that that was what this site is about, from the description I read in the introduction posts.

I just wanted to add, WSS, that I do appreciate your concern and I don't doubt that you sincerely believe that alternatives to the mainstream options don't work.

However, please understand that I want to approach this with reason and logic, not with fear and emotion. Sure, there may be people on this forum who have tried "eating right or exercising" but have not succeeded in reversing their disease. However, that is not sufficient data for me. What percentage of them were stage IV, what protocols did they do, how comprehensive and strict were they, for example.

How many go the mainstream route and also do not succeed, I'd also ask. Sure, a majority might have a 5 year NED (if I understand that abbreviation correctly) rate but what percentage have recurrence after that?

In a nutshell, since this forum seems to be very mainstream oriented (I think?), then there is a skew of the data against participants who otherwise would be telling their stories of natural reversal.

Lastly, regarding, "Doctors wouldn't recommend those treatments if they weren't the right way to go": oh yes, yes they would. Sure, most doctors do want to help their patients, but there is so much money wrapped up in this industry (~126 billion) that good intentions get corrupted among many in the field. Whenever there are big money interests involved in anything, my natural tendency to be skeptical goes into high gear. My wife is also like this. Given her medical history, she would have died if she had blindly listened to MDs and MDs alone.